The End Unexplained Cardiac Death (EndUCD) Registry for Young Australian Sudden Cardiac Arrest.
Elizabeth D Paratz, Luke Rowsell, Alexander van Heusden, Dominica Zentner, Sarah Parsons, Natalie Morgan, Tina Thompson, Paul James, Andreas Pflaumer, Christopher Semsarian, Jodie Ingles, Rosalind Case, Jocasta Ball, Karen Smith, Dion Stub, Andre La Gerche, undefined Australian EndUCD Registry
Heart Lung and Circulation | Elsevier BV | Published : 2020
In 2019, the first multi-source registry of sudden cardiac arrest and death for patients aged 1-50 years launched in Victoria, Australia. Sudden cardiac arrest (SCA) affects approximately fifteen hundred younger Victorians per year. The End Unexplained Cardiac Death (EndUCD) Registry enrols SCA/D cases aged 1-50 years, providing family screening, access to psychological support through clinical sites and creating a genetic biorepository for whole-genome sequencing. The registry will support clear pathways of cardiac assessment, epidemiological profiling and routine family screening and psychological support.